Coping with a stomal fistula

Coping with a stomal fistula

This is an unusual complication of IBD and stoma surgery. When having surgery I didn’t really know about or expect any weird and wonderful extra complications. I know of many with an abdominal fistula, which has its own issues, but I only know of one other with a fistula attached in some way to a stoma.

A fistula is an abnormal tract that links two organs and my fistula links my small bowel to the skin right at the very base of my stoma.

I have had it for just over two years, it started whilst I was still in hospital, and my stoma nurse Kate has been great. It causes poo to come out of the fistula as well as the stoma so double trouble. My skin can suffer occasionally as the output burns that area and I found the Eakin seal a great help. I find changing my stoma sitting up on my bed easiest because I can be prepared with all my kit and let my stoma skin air a bit too.

It kind of looks a bit like granulation but bigger and silver nitrate doesn’t help.

Recently I have had more issues with it and am finding it difficult to sort out. It seems to have grown a bit and on the negative side, more output from it.

This means I have experienced a lot more leaks. My stoma nurse said last time that I should consider surgery to repair it now, and I agree. But there are reservations, my surgeon said I could be more prone to hernias and prolapse, so the decision will not be made lightly.  What do you think? Anyone else had a stoma revision? How did it go?

I have just had a persistent perineal sinus tract surgery last week, so that doesn’t help because I can’t sit much at the moment. So waking at 5am with a bad leak two days after surgery isn’t much fun, you can’t leap out of bed as quickly. Oh well, onwards and upwards.

Wish me luck.

  • Hi Clare, 

    i also have an abdominal fistula plus a stoma,  not great are they! 

    Nice to meet someone else in the same club.  I call myself Mrs. Nobody as I have found once you get a fistula, nobody wants to know, they are classed as a surgical catastrophe and are very difficult to fix.  I’ve had mine 4 years, constant problems. 

    What is the plan with yours ? 

  • I was considering surgery but my stoma nurse has got me trying convex bags and a really good barrier wand thing. Not many of us around, what about yours?

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  • I’m sure I replied, it’s disappeared!

    long story as they tried tomrepair it in May 2017 but it failed resulting in sepsis and respiratory arrest.  They want me to live with it which is not easy as I get frequent infections requiring antibiotics.  I have to wear 3 bags and the fistula ones leak, it’s a nightmare and has made me very depressed at times x